Some bodies

All my life my mum has said I’m built like a brick outhouse. Especially as an adolescent, I thought I had such body woes. Don’t we all.

Now I can’t feel my feet because chemotherapy left me with lingering neuropathy. I walk slow, but I haven’t had to re-learn to walk, like other survivors I’ve met. When I cross the street, I’m grateful for my legs (after wasting away during chemo, these legs are back, babe, thanks to the monster dose of daily steroids that keeps my lungs functioning).

Oh, and my lungs. Bleomycin pummeled my lungs. Bleo is a wonder chemotherapy drug, but sometimes it wraps up your lungs in a web of wooly tissue. You can see it very clearly on a CT scan. That’s called pulmonary fibrosis. It’s a permanent condition, except when it isn’t.

That’s where I am right now. I move slow but think pretty quickly thanks to the steroids. Some days I have manic thoughts. The steroids still give me hallucinations. It’s exhausting to talk with me, and if no one wanted to talk with me at all, I’d understand.

I no longer fret over looking like a rugby player in a dress. My favorite thing to do during treatment was to try on clothes and give myself manicures and watch makeup tutorials and try to tie headscarves. My friends did all these things with me because they are the best.

I’m sure I’ll forget to wax my eyebrows again someday, Andy Rooney-style (once they grow back). This vanity won’t last forever. But modesty isn’t a thing when you are a cancer patient, either. So I love what I can about this mutinous body. Now that I’m allowed to exercise and travel and run – albeit slowly – I cherish this meaty suit.

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I can write things like that. “Meaty suit.” Ha ha. It’s a thing you do to be funny and self-deprecate when you have a body that is valuable to society.

The uncomfortable truth, though, is that we make it clear that some bodies are not valuable. Not even from their beginnings.

Because in the West we think even of people in terms of economic value, we design spaces to suit valuable bodies and their endeavors. When you are a slow pedestrian in a crosswalk, people get impatient in their cars. People in cars likely have somewhere to be, and money to spend when they arrive.

The people who have less valuable bodies receive less from society, in a spiral of – strictly speaking – unfairness.

Less safe space in public or public transit: street harassment of women, and especially women of color.

Fewer chances to be human and fall outside of expectations of people in power: minor traffic stops turn into major legal troubles for minority citizens.

Reduced support for basic necessities like food or health care: cuts in social services mean families make rational, economic choices – and are then demonized for behaving exactly the way the system is designed to engage them, suffering from crap food and skipping expensive checkups or dental care.

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Or – let’s get really basic – value judgments about bodies reduce our ability to know and provide dignity. For better or worse, we’ve institutionalized a lot of human services and that makes us bad at messy bodily things. Such as dealing with sickness. Or dealing with death.

A particularly potent threat of sickness and death – to the West – is our fascination with Ebola. I imagine Ebola scares us because it unknits the body tissue itself, slipping viscera from the relatively neat shell of the body. Then – where Ebola is occurring in the world – existing cultural rituals of washing and interring the body heighten the chance of viral transmission to carers in the family.

Western society doesn’t know what to think of these (unpaid, unprotected) carers. Or we think, they should know the science about germs. Or we think, how hard would it be to have some institutional hygiene? If we are used to framing the problem economically, in our mind, then education is the only place to start.

Except: it’s difficult to learn when you are scared. As in, mortally scared. I’m not a cognitive researcher, but I can say from experience that fear defeats the active learning brain any day of the week.

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Why won’t you sleep? This was the question to me after my first chemo treatment. I needed blood transfusions regularly because my bone marrow acted all useless due to cancer metastasis. I was given all kinds of drugs to sleep. I could fight through the drowsy part when I took Ambien. Then I hallucinated from lack of sleep, steroids, and…Ambien.

A tall lady crawled out from behind the dresser in the bedroom one night to let me know chemo was actually part of a Matrix-type experiment and that once all the valuable minerals in my body had been depleted, I would die. This was probably in a dream, but hallucinations are also a thing for me. So I decided not to sleep. For the foreseeable future. One night, I thought: perhaps I’ll get out of bed and tell my mom what the tall lady’d said.

NO, I decided. WHO KNOWS who else is in on this? And the next time I was hooked up for a chemo infusion, I gave the nurse the side-eye.

Why won’t you sleep? The nurse asked in the tone of a potential confidant. I hesitated. And then I told her I was afraid if I slept, I wouldn’t wake up.

They gave me a psychiatrist to help explain why I wouldn’t die in my sleep, and further, that they wouldn’t let me die in my sleep. Aren’t you a PhD student? They asked me. That’s not how the body works. They told me. But in my very scared state, reassurance was infinitely more important than any explanation.

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The doctors were right, of course. No one was going to let me die. I go to a great hospital. My doctors believed me when I said I was in pain or something was not working.

There is nothing to automatically reduce my credibility with doctors – like having a drug addiction in the past, or being a minority, or poor. The implicit economic and social value of the body I possess is part of that.

Sometimes the hospital puts patient testimonies on the bus advertisements in my city. The bodies in these ads look diverse, but it is clear the person on the bus needs to be an economic success story. One lady is quoted as saying she gets to have a family. A college student celebrates continuing to make classical music. Another man finished his degree thanks to his doctors.

Hopefully in a bit I’ll be one of those survivors like the side-of-the-bus people. I am grateful for that. I would like for everyone to have a body of value, and for us not to have to experience cancer or disease closely, or firsthand, to think about the social consequences of devaluing bodies based on an imposed economic model. This is a lasting impression far more important than the biopsy and port scars that I’ll carry with me forever.